I was forced to switch doctors. The new doctor says she does not believe in fibromyalgia and that she is taking all of my meds and is pushing lyrica which I already had a horrible reaction to. She sent me to another rheumatologist she gave me back my baclofen and meloxicam. Still have not found anyone to write my narcotic. I have been on meds for over 20 years now and never abused them. I do not want to live like a vegetable and in excruciating pain like the last couple of times a went through this. Does anyone have any ideas. I have had fibro they think since I was a young child I am 36 now. I do not work and am working on my ssd. I am scared and no one understands why.
My heart and thoughts are with you. I am 41 years old and have lived with chronic pain since grade school but never formally diagnosed until the last 3-4 years with something new. Poly arthritis, degeneration of the spine as well other joints, Fibro, Adult Celiac, possibly Lupus (unsure) they say because my labs don't show this but I have all the signs, symptoms of such. My current Dr. Has also taken most of my meds away as well, leaving me with my blood pressures meds and aspirin. " Because you just,.... have Fibromyalgia pain meds are not going to help you. You need to do this,....physical therapy, behavior therapy. I feel that this is all psychosomatic "..... REALLY?......I would love to see her deal with the days that I ca't get my kids up for school, or the days I cry out to my daughter or husband to help me get out of bed because one can't sit or feel there lower exstremeties to even rise up to stand. "psychosomatic .....? My suggestion? Continue to seek out other professional avenue's, possibly get an advocate to help you, but don't ever give up. " YOU, or I will say WE are our biggest advocate. And if we allow people to force us to become silent and to just accept things as they are with out asking questions or finding someone who will listen? Than why did God choose us to be pioneers in this fight? But to continue forge ahead, bit to try new things. New meds, new therapies, or other alternative medicinal avenue. I apologize I think I vented more than offering an answer. But maybe you can pull something from my tirades, Lol. Hugs!!...Sassy Pants
Try to find a pain management vlinic. Our government has most doctors afraid to treat pain with narcotics because I'd assholes thar abuse them. It is ridiculous that doctors cannot or will not do their job-treat the patient. I guess I am venting a bit too. But seriously let them spend a week in our lives they would never make it. I am at the point that I hope they have to or at least sit and watch someone they love go through what we go through.
Lol, yep got to love them phones. But we'd sure be lost without them. I agree with LMB, some Dr"s are afraid to prescribe narcotics. However, so are Dr's at some pain clinics which is what has happened in my case. But continue to communicate with your team as well as your loved ones. Hopefully, through word of mouth or forums etc. You' all be able to find a medical professional who is patient centered and not all Hospital politics. Good luck, keep strong. Sassy Pants
All I can say is keep fighting. I had to fire my dr of 15 years because he was,a non believer and thought it was all in my head. I have a great rheumatologist and primary care dr who believe now. But it was a hell of a fight to get them to this point.
Hia i feel for you in my eyes by taking away ur medz like that is abuse i dont know what country ur from but in uk if they decided to take away it would b done bit by bit thats really harsh!!!!! Is there a practice manager?? If so call up ask to talk to her/him & ask for the complaints procedure then put in a complaint or go to general medical council have u one of those?? & is there any other dr"s apart from that one?? & look into changing surgerys as that is disgusting!!! Or may b ur rhummi could point u in right direction for a dr? I hope ur ok & good luck dont b worried in fighting back x
Doctors are going out of their minds and it's sad the rate they are cutting or eliminating folks meds!! The Federal Government is partially to blame because they think everyone who goes to a pain Doctor is a "drug seeker" and they say all of these meds are like heroine. If they walked a mile in our shoes, I'm have a feeling that their tune would change real quick!! Don't give up.. Have your insurance company assign you a liason help you find a new doctor. Do NOT give up... You are your best advocate.
Ok so the new deal is I got 2 of my meds back but not the pain med. Now they want me to see pallative care doctore. I am trying to get in touch now. I am hope to get some more info I will never give up or shut up. I just do not want to be a vegetable in bed screaming in pain. I go through that now But I can function a bit during the day. I just don't want to be totally non functional it scares the hell out of me I already lived that way forever.
Don't give up what state do you live in ?If you are in the USA, call your insurance and ask them for references for Dr s in your area, or talk to your family members, or friends about their Drs. My Dr has me coming in every month to get my pain meds refilled, I have to take every prescription I have also every vitamins and supplements for him to write new scripts. The government has done this to us and instead of a stopping the druggies getting their hands on them it is us law abiding citizens that are being punished. I apologize for my rant but it just burns me up everytime I have to lug them to the office.
Yes yes! Find a Pain Management Clinic and try to go with one that is part of a hospital because the doctors at these are more comfortable prescribing narcotics since all the risks go thru the hospital and are not directly on the doctors heads.
So this lovely doctor blocked the rheumatologist referral to palative care. She talked to doctor and told him not to see me when they called yesterday and said I could go there. I have an appointment with pain clinic next wednesday. Very frustrating but I know I have to keep fighting. No the bad dr. Is say she won't even ween me off. She is going to let me go cold turkey, wonderful.. I am so stressed it is making me worse and I smell horrible from sweating.
I am so sorry you're going through this drprstarr I suggest you find a pain management doctor right away. I had a similar situation many years ago but it was a pediatric pain specialist who refused to give me anything remotely strong enough to ease pain from neurofibromatosis type one. I'd be sitting on the exam table crying and begging for something because I was so uncomfortable and in pain. She did give me on medicine and that was toradol And it didn't do jack, I knew it wouldn't. This so called pediatric pain specialist was cruel and heartless she basically thought I just wanted to get high which is not true. I didn't want to take any medication other than the Gabapentin I was on but i needed something else for breakthrough pain or for my daily pain. I cried and begged her, if you saw me you would've been able to see my pain and suffering in my face,eyes,body language. She would push acupuncture on me every single appointment she would bring it up even after I told her I don't like needles of any kind and was not interested in trying it and did not want to talk about it anymore. I don't like needles and I didn't want to have to be poked a bunch of times just for a few minutes of relief. I knew in my heart acupuncture wasn't right. I walked into an exam room one time to find an acupuncture cart, I was furious. She claimed it was left in there and the nurse took it out. She was lying she had it put in there on purpose because yet again she was forcing the idea of acupuncture on me this time by shoving it in my face by having the cart in the room. There's no way that it was left in there. Anything that's not needed or required to be in that room is taken out so it's clean open and ready for the next patient. The pediatric hospital I was at was very good about not leaving things in the rooms that didn't need to be or weren't supposed to be in there. I stopped seeing her. She did not treat me like a child in pain, she treated me like a teenager(I was between the ages of 12-14 when I started and stopped seeing her, I don't remember my exact age) looking to get high, she treated me like I was faking and just seeking attention and drugs. I am blessed to have an amazing pain management doctor now who I've been seeing for awhile. He truly cares about me. He has personally called our house. One time I had a nerve block procedure to try to determine where my chest pain is coming from(to see if it were coming from my back tumors or the tumors in my chest) later that evening hours after we had gotten home he personally called to check on me, he wanted to know how I was doing. He recently called to let us know about a state law thing where everyone with a pain contract has to do a drug test to make sure we are following the contract, not doing illegal drugs. He came to see me when I was in the hospital last year in July, I was at the hospital he works at just a different part but still. I started feeling ill at an appointment with him and had to cut it short. He's a very nice man. I hope you find a great pain management specialist drprstarr. I hope that you're able to get the medication you need at the doses that are right for you. I really do hope these good things happen for you. You deserve to be pain free. You all do. Every single one of you.
I didn't realize there were so many of us going through this. It really angers me that the federal government has made it nearly impossible for those of us that are in dire need of something to ease our chronic pain so we can function. Due to some assholes that abuse or sell their drugs. I took myself off of all my pain meds over a year ago. I couldn't figure out which med was causing me so many issues. I took soma with each pain medication. Most of the narcotics caused terrible muscle tension. Methadone was awful with and without soma. Oxycodone and OxyContin were awful with soma. Norco same with soma. It was the soma causing the problems. Now I'm on ultram (lol) cruel joke, doesn't touch my pain. They tell me not to take too much otc pain medicine as it's not good for you. I have been cut off of meds because my doctor did not believe that Fibro is "real" I've been threatened that if I choose to stick with my fibro diagnosis they will put me back on methadone. This has been going on for over 20 years. They call it doctor shopping, however I'm not getting pain meds and going to multiple doctors for them. I refuse to settle for a shit doctor. These are OUR bodies, we live inside these torture chambers not them. I asked for a referral to a pain specialist, I got ultram and a referral to a neuro surgeon. The doc said "you need your back fixed" in return I asked that he send me to an orthopedic doc that also specializes in pain management. He refused. I've been to 4 neuro surgeons, with the exception of my neck surgery in 2008 to replace and fuse 2 herniated discs, which only made me worse. They've all told me they will not operate on my back. I am sorry for venting myself. I'm new to this app and I've never expressed my frustration. So many doctors are ego maniacs or they are frightened by the newest war on chronic pain sufferers. Keep looking for a compassionate doctor is all we can do I guess. Write to your state senators and congress members. Write letters of complaint to FDA? Not sure if it will help but fight like hell for your own sanity and health!
1971- Sorry to hear your frustration.I have come to the realization that what we should do and what we need to do in order to maintain our sanity are on opposite sides of the spectrum Federal guidelines don't seem to be loosening and Dr's are actually scared from practicing medicine. If you have to go to 10 Dr's then do what you must,cause after you walk out. That office you are on your own.I am personally done with being stressed when I get home for Not getting my point across.I now save documentation from everyone and have even brought my. Social worker with me for assistance.Pain and depression go hand and hand so speak up you'll feel better Good Luck
Delilah2420, very well said. You are right about going about and finding the doctor that's right for you. There is no reason to be dismissed, treated rudely or accused of being a "drug seeker" when you are trying to get answers as to why Your pain is so bad and what cab be done about it. My pain management doctor is also wonderful. I have been going there for 20 years and I can talk to him about anything!! He's been to my house, he's been in the OR holding my hand during surgery and he never left me and was always trying to find other meds and/or treatments that may ease my suffering. He's a good man. So is the nurse practitioner in the office. The treatment I get there is second to none. I always include this doctor in ANY medical things I'm having done. Having the right doctor or right team of doctors is critical to feeling better. I pray that each and every one of you finds that doctor or that team and is able to get help for this horribly unbearable pain. All the best and I pray you are all having a peaceful Subday with lite pain. 💕🙏🏻🌻
Delilah2420 and Alwayzinpain are correct. Try to find a Pain Management Specialist. My pain management physician and his team are awesome. They actually listen to me, consulted with my rheumatologist, and designed a treatment plan specifically for me. When I have questions regarding my treatment or feel adjustments need to be made, my physician listens and discusses options with me. There is never a reason for a physician to accuse a patient of being "drug seeking", or to belittle them and dismiss their concerns. Having the right medical team in your corner can make all the difference in your treatment and your outlook. My prayers are with all of us. 🙏
I am Around Cleveland Ohio. I had a great doctor until I grew up and lost the health insurance my parents had me on. I worked until I was seriously injured in an accident which in turn exasperated my fibro. Since 2003 it has had a mind of its own. I swim on a regular basis. I also cut almost all sugar out of my diet. I am still working on cutting carbs that is my weakness. My old doctor was the beSt and even talked to the new doctors and told them how we ended up with the regiment I am currently on. I am allergic to lyrica and most antidepressants keep me awake for days on end. I have tried everything. I have never miss used my medicines yet I am being punished because doctors over prescribe and people take advantage to get high. What burns me is when I am standing at the pharmacy and I just had to give blood and pee in a cup to prove I am taking my medicine but there are several people picking up scripts who right when they get them pick up the phone and are saying out loud, hi just got my script when you coming to get them. How does this work my frustration is beyond belief. Now palative care dr was recommended but the witch I saw talked to that doctor after the appointment was made and told him not to see me. She is blocking me at every turn. I am angry and it is not helping my pain. Also I am so tired of people telling me what I do and don't need and that I will be fine without meds. Who do they know? I have been without several times I remember the night terrors, screaming in pain, not being able to walk. Why is it not my decision how I want to live? I don't want to be bed bound I want to have what little life I can and I am being punished for it.
I hear you loud and clear!!! I have had people that are supposed to be friends of mine say to me that I would be so much better if I just got off "all that shit"! Really?!? Are they having migraines that would send anyone else to the ER? Are they laying in a recliner because they can't sleep in a bed anymore? Do they walk around with a level 8 pain ON morphine? Are they bedridden when the weather is shitty for more than a few days? The government placed regulations on opioid medication to keep them off the street has only served to "punish" the people who really need the help of these medications. You are right, you should be able to at least live what life you have the way you need to on the medications the doctors have you to help you.
And this is why so many good people wind up on heroin. By doctors who don't know squat about your care taking away the only thing that help you live because of stricter regulations... so in turn you are without....and dying so to speak.... no drive to lice through the pain... so what do u have to lose when you're already cut off and pain pills are too expensive on the street? You result to heroin. Its so sad but it's the truth. and they just doooont care.
Most of my family say that my CRPS is all pyschosymatic, like what?? So I agree with all sassypants says. Some people that don't understand just think it isn't real or we are over exagerating and if we just "think happy thoughts" and exercise all day every day we will be healed magically. Its depressing that some people are like that. But I wish you luck in finding a doctor that's actually logical!!,
Drdpstarr, after reading your post, it really made me think. It is sad that she is doing this to you. But the bottom line, she may not believe in fibromalgia but that would mean her work is cut out for her to do further testing. There comes a point that they sometimes they don't know what is causing our pain but it is not making it less real. Personally, I would arrange a consultation with the management of this doctor, and find out and find out the basis I why she is not treating you for your pain when you are in pain even though she does not believe in fibromyalgia. Tell them you would like to know the cause so if they could fix it, then they can do it. But for now they aren't doing that. You might find out that they think you are a drug seeker. You can have things corrected in your file, not removed but clarified that show their is no evidence of their thinking so when the next doctor sees your record, it will help your case. This is just a thought. If you decide to do this, I would do this with calmness and with professionalism. Any hint of being emotional supports their case. I say that because being in pain, it is so easy for us to be emotional with what we are going through and if some doctor was pulling this crap on us. I would also bring a calm headed witness with you. This is just a thought. I am not suggesting you did anything wrong.
Hmmm, I don't get people saying it's in your head. Plus, almost any immune condition is considered SYSTEMIC by the experts. Some docs are trying their best, but they don't understand how something can start in one place and spread. My current neuro (miss my old local one) thinks that because my pain spread it's not CRPS. Grrr. He's like "I've diagnosed 8 people with CRPS, it looks different than you" Will thanks, that's a lot (not!) of help. I've been researching on PubMed, read blogs by other people with crps, and been in contact with a many people as possible. I'm also thankful, in some ways, to the very compassionate nurse at my school. Her daughter was diagnosed with RSD (older name for crps) at 16 years old. Also, have had so many docs just outright refuse to add meds, unless I try certain ones. I'm uncomfortable with the side effects of antidepressants, but they ask say try those and gabapentin and Lyrica. Tried gabapentin and Lyrica, both failed. I've had more success with supplements, so what's up?
I just changed to a new pain doc because my old pain doc made me cry several times (right in front of him). He belittled me every time I was there about my weight, and even when I lost weight just said ,"Well obviously you have a lot more to go!". He made me pee in a cup every time I was there PLUS called me in every chance he got. Just a mean little prick. He also didn't believe in fibro and said he was only treating my back pain. Someone new opened up that deals with narcotics. She just gave me 6 injections, only 2 seemed to have helped, but I don't know much she does or doesn't believe in fibro. My rheumatologist does.... AND he tested me for Sjogrens yesterday. Now, just a few months ago I went to see a new neurologist and he spent 45 minutes telling me that I have too many doctors, fibro doesn't exist, and I need to go to rehab. Sooooo? Idk what to most days. I felt like hugging the Rheumatologist! !!
@SerenaSills I bought my rheumatologist and his staff 3 dessert baskets when I FINALLY GOT AN ANSWER (diagnosis) to what was going on. Once I got a diagnosis, then I could start to treat the problem; but before that diagnosis, I spent over 4 years in hell and agony; being accused of everything from "drug-seeking", hypochondriac, morbidly obese, suffered through 2 "exploratory surgical procedures", and numerous referrals for psychiatric services.
My rheumatologist diagnosed me with Systemic Lupus. He also diagnosed me with Sjogren's Syndrome, Chronic Pain Syndrome, and Fibromyalgia. I bring my rheumatologist and his staff dessert baskets at every visit I have. The second thing he did was refer me to Pain Management Specialist to help treating the Chronic Pain Syndrome and Fibromyalgia.
Having physicians that listens to you and doesn't belittle or demean can make all the difference.
Hugs 🙅 and Prayers 🙏 with us all Peace ✌ Love 💚 and Frogs 🐸
🐸 I love frogs :) I think my new doc is going to be good for me. He's doing more within first 3 or 4 appointments to figure out the root instead of just brushing me off or attributing everything to depression. I'm feeling a little hopeful but afraid to get to get too hopeful. ✌️💜
@ anonymous1971 So glad to hear that your new doc is working well for you so far. Prayerfully he continues to be an advocate for you. 🙏
Glad to finally know another frog 🐸 lover. Lol Green 💚 has always been my favorite color and I've loved 🐸 since I was a little girl. Frogs have especially become my good luck charm, comfort charm, and happy charm throughout my journey with lupus and "her friends". I really love turtles 🐢 too! Always brings a quick smile to my face.
My Dr's won't give me pain pills I been taking prednisone .....never abused any medication. ....why won't the Dr's give pain pills. ...I am working with so much pain discomforts. ....then sit there and listen to someone pulled muscles. ....to myself thinking wish I had that I give you my fibro. ..severe arthritis. ...bursitis. ...and I get no pills for nothing. ...lol
Holly, they are all scared of the new drug laws and don't want to have to deal w I th them. At mt husband's pain doctor we have actually seen patients get dismissed for using cocaine and meth! I was flipping out! You're going to see a pain doctor for narcotics AND use those drugs and hope you don't get caught?! WTF? I'm afraid to try pot just in case it might show up... never tried it yet in my life, but don't want to risk it now either, and these idiots are doing coke and meth?! These people are the reason we can't have medications.
@Shiovahn, I also ❤️🐢 I love all animals turtles are just so darn stinking cute. I was always down in the creek as a kid catching frogs. I absolutely adore 🐘 as well. Such majestic and sentient beings. My favorite colors are green and purple. I'm hoping to have a serious discussion with my doctor tomorrow.
Find a doctor that isn't governed by insurance companies. Think about it. Someone with a bachelors degree or less working for an insurance company tells the doctors what they can and cannot prescribe or even test for. It makes zero sense. I finally found a doctor that gives a damn and I am so so so thankful. It has taken me months!
LBroomfield, so are you saying that you are seeing a doctor that doesn't take insurance? My doctor (pain management) does take insurance but is fed up with having someone as you just described telling him what he can and can't prescribe or test for. It's really hard.. The government is putting such strict restrictions on medication that pain management patients are suffering because of it. I'm glad your doctor is an out of the box kind of guy!!🌻🙏🏻
SerenaS, I'm so glad you have a good rheumatologist! I would look around for a different pain specialist. Ask them if they do/do not treat fibro. And I'd find a new neurologist too. Sometimes you have to go through several before finding a good one. No doctor should belittle or demean a patient. Consider writing a complaint letter to the state licensing board.
I found out I have Sjogrens in the Spring. My doc put me on Plaquenil and its reduced my pain drastically. Sjogrens and fibro share common symptoms, as do many of the autoimmune illnesses. I hope you get the results back soon, with a dx. Shiovahn is right... We need to know what we're dealing with too treat, rather than putting a bandaid on. Good luck! Hugs & prayers. 🙏🌼
Hi all! I'm new here and have learned so much already! I am 38 and have been suffering since my early teens. I have had 3 back surgeries, 1of whuch was a spibal fusion. I have been told so many times by different doctors that it was all in my head or that I just wanted pain meds before my 1st surgery and since. If I hadn't forced the issue of an MRI before my 1st surgery I don't know where I'd be now, as it is I have permanent sciatica nerve damage leading to my left leg becayse they ignored me for 3 months then had tto do emergency surgery when I was 23. It has been a constant battle and several incorrect diagnoses but hopefully we are headed in the right direction now. Don't ever give up and remember you ultimately know your body better than anyone else....that's how my current pain management doctor looks at it. I don't see a rheumatologist at present since the last 3 don't believe in fibro but don't know what is wrong either. I have a lot of the same symptoms as lupus but since my blood work is mostly normal they say that's not it. I have suffered from insomnia, IBS/constipation, depression, anxiety, PTSD, osteoarthritis, degenerative disc disease, degenerative scoliosis, tinea versicolor, polycystic ovarian syndrome, GERD, Epstein-Barr Virus carrier, vitamin D deficiency, and mini-stroke symptoms where i actually thought I was having a stroke (facial drawing/ticking, arm numbness, loss of speech, etc.) 8 times within 2 weeks and they still have no diagnoses, and severe allergy to any bee/spider/mosquito bite - epi-pen necessary. I think I've covered it all. I have been through every possible alternative treatment before turning to medication. Cold or rainy weather seems to make me hurt muchurch worse.
Most days I'm a mess but we recently did genetic testing that determined which medication I would metabolize and which I wouldn't. This showed me basically that I'm not crazy because all but 1 medication that they have tried off and on the last 15 years I don't metabolize at all or very little. I had began to doubt myself. I believe there may be a light at the end of the tunnel finally.
National Spine and Pain Centers have been good for me. I have been to multiple pain management doctors that have stopped my meds because of the behavioral therapy route that so many seem to be taking. If you have one near you it would be worth a shot.
I was a little lengthy, I apologize. I hope maybe something I said may help someone. I pray you find someone to help you.
Welcome to our community family JSHAFF! We are a diverse group from all over the world with many problems and treatment methods. But we all have chronic pain, so we all understand. You can rang, vent, cry, laugh, etc, without judgement. Your description fits many symptoms shared by most of us. I was dx with Sjogrens, hypothyroidism, dementia and other issues, along with fibromyalgia and a long list of long term chronic issues. Cold weather has become my enemy, at least in my hands, get & joints. I oppose you settle in and begin to share your experiences and methods of treatment. You'll be in my thoughts and prayers! 🙏🌼
Hi I am so sorry for all of the trouble that everyone is going through at the people who are supposed to be helping them! I changed doctors after my PCP of nearly 30 years told me I was just going to have to live with my headaches. He's also the same doc who suggested that he thought I had Fibro 20 years ago but chose not to treat it then because of insurance. He also chose not to treat it later when insurance did finally recognize it. I had to find a neurologist on my own to find out I was having chronic migraines. I changed PCPs and that led to the rest of what I've learned so far. One thing I am wondering, are any of your MDs also Drs of osteopathic medicine? I chose my neurologist because she is one, and I chose my PCP for the same reason. I also asked my neuro, my gyne, and her receptionist all who they would recommend in the area where he was located and they all immediately gave me the same name, so that backed up my choice. And he is amazing!!! Unfortunately the insurance wars that we have going on here (thank you very much Mr President) have meant that I can NO LONGER my doctor! (Sorry - venting)
So back to my question, are any of the Drs that you are seeing who are giving you problems dr of osteopathic medicine? In my experience, I feel like they seem to be so much more.... empathetic!
Most of the doctors I have seen are osteopathic. I have found they are my more likely to try anything and everything if they truly feel it will help you instead of only relying on surgery or medication. They are mire empathetic in my experience.
...and more aware when it comes to connecting all the dots! It's like they know how to sort things out better and understand that a pain in your toe might be related to your Ibs and trouble breathing, etc